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Getting Inspired at Casting 4 A Cure

Submitted by Anonymous on September 23, 2013 - 6:10pm

by Anya Bean

In December 2007, Beth and Bill Farnum learned that their daughter, Ella, had Rett Syndrome (RTT), a neurological disorder that affects one in 10,000 children. Within months of learning this devastating news, Bill, who works at Nike, came up with an idea to link his newest passion—curing Rett Syndrome—with his oldest one: fishing. He planned to organize a fly-fishing trip for friends and co-workers, asking for donations towards RTT research in return.

Dubbed Casting 4 A Cure, the event has grown drastically over the last few years—and after attending the opening day at Bar Z Riverside Ranch, I understand why. At this event alone, 22 fishermen, 11 teams, and 11 guides arrived from all over the country. "This is the best fishing I have ever experienced," says one participant. "Each summer I travel thousands of miles just to fish these waters. It's a great event linking amazing fishing to an amazing cause."

Every year, more and more of Bill's Nike coworkers attend the event. Some participants are affected by the rare disease, but many don’t know anything about RTT before becoming part of this fundraiser. One contributor, Ed Kammerer, has an 8-year-old daughter with an atypical form of RTT. She is blind, in a wheelchair, and needs a feeding tube. After meeting families affected by RTT and hearing their stories, it's hard not to want to help.

The Bar Z offers exclusive access to Sheep Creek, the North Fork of the Smith River, the upper Smith River, and two private lakes. These waters boast access to brown trout up to 30 inches, rainbows exceeding 20 inches, and cutthroat trout (Montana's only native trout) up to 16 inches. "The fishing here is truly amazing," says Mike Patron, a guide for Bar Z. "We have technical fishing, easier fishing, and we never fish the same section more than once a week." Moreover, he says, a lack of pressure ensures quality time on the water. "We don't host big groups, with the exception for Casting 4 a Cure." Patron also notices the effects on the participants. "The weekend goes so far beyond the fishing," he says. "A lot of people come here for the fishing, and leave with so much more. Pretty much everyone who comes here, comes back."

Friday night brought out more than 60 people: staff, participants, and local residents donating their land. As Bill showed a video of his daughter, Ed’s daughter, and their wives, he teared up and had to take a minute to collect himself. He composed himself and explained, “It doesn’t matter how many times I give talks about RTT, it never gets easier.” Bill exuded a genuine passion for finding a cure and building a sense of camaraderie with everyone involved, whether long-time companions or new acquaintances.

Later that evening, Dr. Steven Kaminsky discussed current RTT research and what future research entails. He explained that symptoms begin to show around 6-18 months of age, after seemingly normal development. Stagnation of motor skills becomes apparent at that point, followed by developmental regression. Characteristic symptoms of the disease include loss of speech/communication, loss of motor skills, irregular heartbeat and breathing patterns, and increased risk of seizures. Currently there is no cure or significant treatment for Rett Syndrome and there is limited funding for RTT, despite it being at the forefront of neurological research. At the conclusion of Dr. Kaminsky’s presentation, Bill presented a check for $25,000 raised at the Casting 4 A Cure event in Victor, Idaho, several weeks before the Bar Z event.

“The weekend was a great success," says chef Kelli Merkel, who has catered and helped organize the Bar Z event for the past several years. "It's a great event for an amazing cause. Hearing first-hand what these families endure, and their desire to have a daughter capable of uttering the three words every parent deserves to hear... is a feat I can't fathom.”

Mitch Menendez, who has been a participant for the past several years, couldn't have been happier about being there. "We had a blast," he says. "From the camaraderie amongst the group, to the great work that's accomplished for Rett syndrome, to the unbelievable fishing. I know across our group this is a weekend blocked out on people's calendar.” Patron agrees: "All said and done, everybody caught a fish and had a smile on their face."

To become involved with Casting 4 A Cure, visit the website here. To learn more about Rett Syndrome, visit rettsyndrome.org.